Karen Martin

Linda, after reading your post about the silent GERD, it makes me wonder if some of us who are taking anti-fibrotic meds might be in the same boat.  It would certainly be less expensive to treat things this way.  Sounds like something worth exploring with my pulmonologist.

I also use Zyrtec and Flonased (generic forms for both) for the drippy nose.  (They are both OTC meds, Char.)  The thing with Flonase is that you need to take it every day as it works best on a cumulative basis.  Once I got that part figured out, it works much better.  I still have some dripping, but it is much more manageable.  The Flonase is a…[Read more]

What about a strip of the two-sided velcro that sticks to itself?  That could be fastened around the “handle” of the concentrator or strap of the POC and then around the canula,

I’m on Esbriet and don’t know if this qualifies me for a third shot.  Will ask my doctor.  For those of you who get a sore arm, I was told to massage the area when it starts to ache.  I did this when I got my first two shots and it made the soreness go away very quickly.  Stay safe, everyone!

Christie, thank you for your response.  I admit I feel much like a y0-yo with the question of transplant.   Until I see what my heart looks like due to the PAH, I won’t know if I can even be considered now, but I think about it.  It is good to know these feelings are normal.  I really appreciate this group.  I have learned so much from readi…[Read more]

I also have itching with Esbriet and I have been on it for two years now.  Backs of my hands, back, legs, ankles…you name it.  Lotion helps sometimes.  When it gets especially bad on the backs of my hands I have used cortisone cream, which seems to stop it.

(George, aren’t you clever, noting Bob’s avatar is a pup!)

Dennis’s comment about transplant being the only answer resonated with me.  I have not had an AE to date, but have recently been diagnosed with not only emphysema and IPF, but also PAH.  The idea of transplant has been very scary to me but when I was talking to a friend today, she said, “Not to be crass, but what have you got to lose?”  So…[Read more]

One more thing to consider right now is where you live.  Although I live in SW Virginia, the smoke from the fires out west and in Canada has made it all the way here and affected the air quality.  I have been staying inside because of it, but you might also want to be checking things like pollen counts and air quality reports.  I have coughing at…[Read more]

This question is a little different, but since you all are high oxygen users I am hoping you will have some answers for me.  I can use less oxygen when I am sitting quietly, but I need 10L when I am up and about.  I have my home concentrator in a central part of the house, not right next to me because of the noise and heat it puts out.  I don’t tu…[Read more]

I love Aquaphor, but the main ingredient in it is petrolatum, which is “a byproduct of petroleum refining”  Good for lots of things but maybe not here?

I have also found myself coughing after eating, mostly in the evenings.  I will sometimes take something like Tums and it seems to help.  I regularly take Prilosec but it doesn’t always seem to cover the evening meal.

Lnour/Loai, I have found cottage cheese to be pretty helpful with the GI issues.  I also eat chicken and tuna fairly often as my protein.  At other times I will drink Boost protein drinks.  They come in handy when I don’t want much  volume but still need something.  I hope these suggestions will help you, too.  🙂

I know that the thing that helped me the most was going to pulmonary rehab.  I met other people with the same/similar issues as I have and realized it is far more wide-spread than we think.  Seeing others getting on with life and being happy and helping themselves with exercise made me see the situation very differently.  I will admit that one of…[Read more]

Hi, Yoli.  Love the shortened version of your name.  I have been on Esbriet now for nearly two years.  I also had diarrhea for a time at first as well as upset stomach.  What I was told by the company was this: Eat a small amount and take one pill.  Do this again and again for the second and third pills.  But what they really stressed was the n…[Read more]

My daughter was diagnosed diabetic at a very young age.  Being small anyway, she had difficulty eating as much as the doctors wanted her to eat.  We were told at that time to look for “calorie dense” foods.  Perhaps this same advice might help your husband.  I wish you much good luck with this.  (Alternately, I would be more than glad to dona…[Read more]

Thank you Christie, Susan and Bill.  It is wonderful to have so many people respond so fast to a question like this.  I will definitely be calling both the electric company and the local police/fire/emergency departments about this.  I feel that I am properly “armed” now to present my/our case.

Susan, believe it or not, your reply made me laugh!  That would have been the perfect response.  I will admit that I was so stunned that all I could do was hang up.  What I really need to do is call back and, if I get the same answer, ask to speak to the supervisor.  I think that with your comment in mind I could do that without too much dif…[Read more]

When I called my electric company to tell them about my oxygen, they told me they base their jobs on priority and that isn’t necessarily one of them!  Nice, right?

Bill, I know oxygen isn’t flammable, but I was thinking about some of the other things you mentioned.  I secure my tank by tying it to the shaft of the headrest in my car, but still h…[Read more]